Hospice and Palliative Care Experiences as Expressed on the r/hospice and r/palliative Subreddits

Area of Science:

• Medical Social Sciences
• Online Health Communities
• End-of-Life Care Research

Background:

• Hospice and palliative care are crucial components of end-of-life support.
• Online forums like Reddit serve as platforms for medical information exchange and emotional support.
• Understanding user-generated content can illuminate patient and caregiver needs.

Purpose of the Study:

• To qualitatively analyze popular questions and advice-seeking posts within the r/hospice and r/palliative Reddit communities.
• To identify key themes and subthemes reflecting user concerns regarding hospice and palliative care.

Main Methods:

• A qualitative analysis of 369 original posts from r/hospice and r/palliative subreddits (April-October 2024).
• Inclusion criteria focused on posts with questions, advice-seeking intent, or explicit question marks and a minimum of 10 comments.
• Thematic saturation guided the identification of emergent themes and subthemes.

Main Results:

• Seven primary themes emerged: the dying process (24%), coping and emotional support (22%), hospice/palliative care logistics (22%), medication/side effects (13%), negative experiences (10%), provider support (7%), and other topics (2%).
• The dying process and patient/caregiver support were significant areas of inquiry.
• Subthemes were identified within each of the seven primary themes.

Conclusions:

• Analysis of Reddit discussions highlights significant communication gaps between patients, caregivers, and healthcare providers.
• There is a critical need to demystify the dying process and enhance patient and caregiver support.
• Online communities offer valuable insights into the informational and emotional needs surrounding hospice and palliative care.